Category: Stories

As Chair of Local Families with Bleeding Disorders, I’m thrilled to share the powerful experience we recently had through a unique poetry course. This initiative brought together individuals living with bleeding disorders to explore their thoughts, feelings, and experiences through the power of creative writing.

This project was largely thanks to Dr. Rich Gorman, Senior Research Fellow at Brighton Medical School, who successfully secured funding for this project. Rich is a passionate advocate for using creative writing to give voice to lived experiences, and we are deeply grateful for his support.

The course was led by Dawn Gorman (no relation to Rich!), an award-winning poet, arts practitioner, and journalist. Dawn skillfully guided us through the art of poetry, teaching techniques that helped us unlock deeply personal and emotional stories.

Under Dawn’s expert mentorship, we created some truly moving and powerful poems. The sessions were not only creative but deeply therapeutic. At times, we confronted challenging and painful memories, but the safe and supportive environment helped us navigate those emotions together.

This course has been a journey of connection, courage, and creativity. It was an honour to work with such a wonderful group of ladies, each bringing their own voice and strength to the process.

We hope to publish our poetry later this year and share our journey through an episode of the Haemnet podcast.

This has been an unforgettable and empowering experience that we shall treasure.

As Chair of Local Families with Bleeding Disorders (LFWBD), I want to take a moment to celebrate one of our longest-standing members – Mark Salmen. Mark, along with his wife and two sons, has been with us since the charity began six years ago. Their journey has included major challenges, from an unexpected diagnosis to navigating needle phobia – and through it all, they have shown extraordinary strength and resilience.

We’ve been proud to support them during the toughest times, and in return, they have become a huge inspiration to our community. Most recently, Mark took on the London to Brighton Bike Ride and raised over £1,000 for LFWBD.

Mark, we think you’re amazing. Without people like you, we couldn’t run the events that bring our families together. Thank you for your dedication, generosity, and spirit. We are so lucky to have you in our LFWBD family. Well done!

Living with a bleeding disorder can be challenging, but no family should have to navigate it alone. At Local Families with Bleeding Disorders, we see firsthand how much of a difference it makes when families share their experiences. By opening up about their journeys, families help others understand the realities of these conditions and offer invaluable support to those who are newly diagnosed or struggling to adjust.

One of the most powerful ways to break down misconceptions and create a sense of community is through storytelling. When families speak about the daily realities of managing conditions like haemophilia or von Willebrand disease, they not only raise awareness but also empower others to face their own challenges with greater confidence. These personal accounts provide comfort, practical advice, and the reassurance that no one is alone in this journey.

The recent article by Haemnet’s Kathryn Jenner on severe haemophilia A (Haemnet Blog) is a great example of how storytelling can make a difference. Kathryn has worked extensively with families to bring their experiences to light, and we are incredibly grateful for her expertise. Her ability to capture and share these voices ensures that more people understand the impact of bleeding disorders beyond the medical perspective.

To all the families who have shared their stories—thank you. Your courage and openness help create a supportive and informed community where no one feels isolated. By continuing to speak up, you are making a real difference in the lives of others facing similar challenges.

If you are willing to share your story, please reach out. Together, we can ensure that every family living with a bleeding disorder feels heard, supported, and empowered.